Welcome to the NETs Group! Come say hi.

I need to know how long after PRRT treatment should you get a MRI with contrast and Pet scan
Also I am on Octreotide what is the wait time from injection to mri and PET scan
Thank you in advance for the reply

Hi! I'm from Iowa. Have NETS in my lungs

I would like to invite everyone who has been involved with NETs to a virtual support group that meets on the first Thursday of each month, via Zoom. This group originates from Mayo Clinic in Florida and is open to everyone. This month there will be a speaker, discussing the role of surgery in NETs treatment. After the speaker, there is ample time for the members of the group to share their own stories and ask questions of each other. Here is more information about the November meeting and registration. Please not that you will need to register in advance in order to obtain the Zoom link.

NETs Support Group Meeting, Thursday, November 7th, from 5:30pm-7:00pm EST
Guest Speaker: Dr. Susanne Warner, Hepatobiliary and Pancreas Surgeon
Mayo Clinic Rochester
The Role of Surgery in Patients with NETs
Location: Virtual (Zoom)

Please register in advance for this meeting as space is limited to 50 participants:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering you will receive a confirmation email containing information about joining the meeting

For Questions or Concerns please call 904-953-7266

I appreciate you adding information about your journey with NETs to this discussion group, @quinnie2023. I'm also happy that you mentioned that you find Connect to be informative and helpful.

Being asymptomatic is a common theme for many of us. I've had three surgeries of the upper digestive tract for NETs, while being asymptomatic.

I see that you mention that some of your current symptoms might be related to possibly eating incorrectly. Eating appropriately for the disorder, is important for all of us with digestive tract issues. What type of eating plan has been the most helpful for you?

It sounds as if you are getting good medical care. There are several posts on liver NETs that you might find interesting. Here is a link to several of those posts:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Liver#discussion-listview
I look forward to hearing from you again. Will you continue to post as you gain information or have questions?

I was diagnosed 17 months ago with a metastatic stage 4, grade 2-3 small intestinal NET. Metastasis to my liver and lymph nodes. I am non surgical candidate as my primary tumor is encapsulated in the mesentery. I started monthly lanreotide shots in August of 2023. I was primarily asymptomatic but presented with what appeared to be a gallbladder attack. With further testing the primary NET was found. All in all my treatments are going well. It is hard to determine if the symptoms I am experiencing are related to the disease, the treatment or self inflicted if I eat incorrectly. I have been utilizing this resource for quite sometime and find it very informative and supportive. I am being treated at Dana Farber/Brigham & Women's in Boston.

Hello @quinnie2023 and welcome to Mayo Connect. I see that you recently started posting in the NETs support group. So that we can get to know you, please share, as you are comfortable doing so, a little about your experience with NETs. Is this a new diagnosis for you?

What was the rationale for switching to every 3 weeks?

Did you ever find out why? Interestingly, I was really itchy about a yr ago as well. I think it was due to my low iron levels from the appediceal tumor (that had grown into my colon).

Hi! You have an amazing Dr. would you be able to share the name? I was diagnosed with a 6cm appendix carcinoid tumor. Slow growing. First Dr. recommended right hemi also but second Dr. said that's old school and since my margins were good on my tumor that even with it being so large I shouldn't do right hemi. My dotatate scan was clear. However, I'm having worse symptoms than ever..especially bloating and severe pain on occasions when my intestines move. I've had this pain for about 20 years off and on and in different locations. It got better for about 10 years when I went off gluten (no more pain EVER), until now. I feel there's something we're missing but so far Drs don't seem worried. I'm 42 and possibly some of this is due to perimenopause. Interestingly I got my period 2 weeks early, immediately following my appendectomy. Since then, I've been bleeding sporadically, period comes every 3 weeks, etc.

Good morning!